Supporting My Daughter With a Rare Disease Who Can't Go Back to School During the Pandemic

Today, my daughter Jordyn received a video of her class waving and saying “hi, Jordyn.” She’s the only one who is homebound out of her class. Tears welled up in my eyes for so many reasons. For one, it was so kind of her teacher to think of her and include her in their class even though she isn’t present. It also got me upset that she was missing out on all the fun. Am I doing the right thing keeping her home? What if she’d go and contract COVID or something else? The outcome would not be good given her other serious health issues.

I’m back at work and trying to have as normal of a day as I can, but the worry is always there. I’m extra careful of course, but there’s always a chance I could take something home. The most upsetting thing, though, is the change I’m seeing in Jordyn. Before COVID hit, she was doing well in school. She was happy and I could see a spark in her eyes. Though she couldn’t communicate the best, she fought hard to make her presence known and to be with her peers. She loves school and all her friends.

Today, for the first time since her diagnosis, I felt fear for the future. I’ve always been a “glass half full” kind of girl, but watching the light in my daughter’s eyes grow dim slowly over the last few months is almost more than I can bear. She’s exhausted all the time and has no energy to play. She has no desire to do things she once did. She struggles just to sit up and keep her head up and even her voice has gotten softer and often hard to hear.

I know she’s a fighter and only God knows her path, but my momma heart is breaking watching her struggle so much. I just want to take all the pain away and bear it myself. I want her to feel joy and laughter and to be able to see the world around her again. I want things to come easy for her just once! I want that spark to return.

Tomorrow is never promised. I’m snuggling a little longer, hugging a little more, giving all the kisses, and holding on tight to today. ❤️